“I believe in neuroplasticity. I’m an optimist.”
It was the first appointment with a news doctor that I saw for a couple appointments. I am trying to be a better self advocate for myself by embracing my NVLD in not just the way I manage my home life but also in how I stand up for myself in the world. I was prepared for this appointment. I had a health scare a few years ago that in the end turned out to be nothing more than an ocular migraine. But it took about three months before I got that diagnosis and through that time I didn’t feel listened to and I didn’t feel I was provided with the knowledge to be an active voice of my own health journey. I wanted to start fresh with a new doctor, and I was going to be more assertive and proactive this time around.
I had just explained my experience with NVLD to my new doctor and explained how it fit in my health. That statement felt like she may not understand what I was trying to explain. I was lucky enough to have parents, a school, and opportunities for resources to support my motor skill challenges and academic needs all through my education. On top of that I have always had a very strong drive to succeed and when I focused that on my areas of skill deficit you better believe I refused to accept defeat. As I have mentioned in this blog before, I am not going to be able to make NVLD challenges go away and I don’t think trying to is a healthy use of my time and energy at this stage in my life. If I spent that time and energy on trying to get my challenges to go away I will not have time and energy left over to spend on things that bring me joy or achieve things I am passionate about achieving. I feel the key to a successful life for me at this stage in my life is learning how to live with my diagnosis in mind and work with it.
I felt like she didn’t really see my NVLD as a real thing. And I am not sure if she actually knew it was a thing and, if so, believed in it. Many professionals in psychological and educational fields don’t know what it is and, if they do, don’t believe it is a real thing. They will say it’s really just another neurodvelopment condition. And many neurodivergent people do have more than one diagnosable condition. Many NVLD-ers are also autistic, ADHD, dyslexic, etc. But the others never really seemed to fit for me. I read books, listen to talks, sad in the resource room as a child, and follow autistic and ADHD advocates and on a specific and direct level I often don’t identify with their experiences, or at the very least the experiences they present as effecting their daily life the most.
But when I got the NVLD diagnosis that changed. I found YouTube videos talking about challenges putting your hair up, read accounts of people who had trouble learning to drive because of spatial awareness challenges. People who use their GPS in their car to get to a newer location like their office, or a friends house longer then others do, or more often then people they know, and maybe also found themselves taking a walking to their classes from the same route the first few months of college because if they tried a different route they may get lost. Stories about trouble working with your hands, or making a bed neatly, or finding art class to be one of the most challenging and even upsetting parts of the day. People who found learning to ride a bike or tying their shoes to be the biggest successes of their young life. Other people who don’t remember visual detail. People who find it challenging to commit navigating a computer program to memory because it is a visual skill after all. And most of all, finding the most success with many things in life if they can find a way to process it in words.
NVLD was the first thing that ever made sense to me. And best of all, it made me feel less alone.
But there was still one problem.
NVLD is not in the DSM.
Sometimes I wonder if I would have qualified for special education services as a child or for vocational rehabilitations in my 20s if I would have had the NVLD diagnosis first? I almost wonder if the reason I was never given a name growing up, even though it was pretty clear my “specific learning disabilities” were actually all nonverbal skills, had anything to do with keeping me eligible for services. I don’t have major challenges that would classify as disability outside of symptoms/challenges/choose-your-preferred-terminology of NVLD. But my NVLD challenges are definitely a disability in in my life.
If NVLD was in the DSM there would be more studies on it. Schools could get more funding to meet NVLD kids needs with DSM diagnosed students. There would be more doctors who understand it improving our care, there would be more mental health professionals who know about it. Perhaps, thanks to an increase in HR DEI (diversity, equity and inclusion) work place programs including neurodiversity, perhaps one day someone can go to HR and say they have NVLD and a verbally- based training plan can be established that will meet the NVLD-er where they are and result in getting up to speed on the job more efficiently and successfully. Mental health treatment can be centered around what we truly need. And maybe, one day, I can explained NVLD to my next new doctor and she/ they will know what that means without implying I need to have a more positive attitude and it will all go away.
It is true that we have a ways to go regarding neurodivegent affirmative medical care, education, workplaces, and mental health treatment for diagnosable conditions that are already in the DSM. It is true what I described is not happening nearly enough for people whose diagnosis are in the DSM. But there are many autism and ADHD social media advocates that are getting the word out and people are entering these professional fields, slowly but steadily, who are listening to these voices. As NVLD continues to be left of the DSM it is hard to get our words out as much as these other advocates are able to. It continues to be hard to establish as much of an NVLD community as other diagnoses/ neurotypes have the opportunity to obtain.
For this reason I am so proud to be a Project Social Ambassador for The NVLD Project. I am happy to do what I can to get NVLD in the DSM alongside our neuro-cousins and have validation that we are just as real and valid as any other neorotype. And together we can create a better world for us all.
Disclaimer: This blog is intended for the purposes of entertainment. It tells only one person’s personal story, opinions, experience and perspective living with NVLD. Each person with the diagnosis has different skills, challenges, perspectives, and personalities. This blog is not intended to provide medical or educational advice. Please speak to your doctor or teacher regarding yourself and/or a family member.
Writing Errors: This blog may have typos or errors from time to time. To keep to the goal of being honest and open with the way her LDs expresses in her life, the author has chosen to not have others proofread and chooses to leave in errors she was not able to pick up on herself at time of publishing.
This NVLD Life 